Home at last. And now to figure out how this all works in the real world….
Since coming home on Sunday, we’ve gotten into a routine. We started doing things one way, adjusted, adjusted back, and so on. We’re really still in a state of flux, but we have things mostly under control. Anna takes Bactrim twice a day, and has Tylenol with Codeine and Ditropan to take as needed. Anna...
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Last night, all went well with the flushing of the MACE. It was rather comical, actually. Dr. Perez said to start with 20ml and continue up to 100ml as long as she tolerated it. We were using warm tap water and a large syringe. Anna was very afraid of the “what ifs” of the situation, but she had much less discomfort than she anticipated- if any at all. After putting the water in, we...
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Today was sporadically eventful. The day started off with the permanent removal of TPN. Hooray. We also had our first clog in the suprapubic. Boo. As we have been warned, that was a painful experience. We’ve been flushing it twice a day, but it just got backed up in a short period of time. Contributing to this was the capping of the Mitrofanoff tube. The Mitrofanoff had been draining...
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For those of you who know that our family has special dietary needs, I will clarify that Anna, specifically, does not have any food intolerances that we know of. So, although our household is gluten, dairy, food coloring, cane sugar, etc. etc. free (the list actually goes on), Anna gets to eat whatever she wants when she’s in the hospital. That’s why, besides a bite of pancake this morning,...
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Today, Anna graduated from clears to thicker liquids. She’s not as excited about this as one might imagine. For lunch, they sent her a yummy looking strawberry smoothie from “Freshens”. She took one sip and rejected it. Ben (age 6) was there to save the day, though. He slurped down almost the entire thing. Anna is allowed to have anything she doesn’t have to chew,...
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